An Announcement from the Director of The Center for Good Grief, Angela Hamblen Kelly...

Today is a special day!

Thursday, July 26, 2018 marks the one year anniversary of the opening of Milla’s House and in one year, we have been busy. We have always known the need to provide grief counseling to our community was essential, and we have tried to keep up with the increasing demands from year to year. Expanding our reach to the midtown area has allowed us to serve more grieving individuals and families in our community.

Because of your support, Milla’s House has been able to provide over 2,000 individual grief sessions in this first year!

This is incredible work you helped us accomplish and we would not be able to do this work without you, our gracious friends and supporters. We sincerely thank you for supporting Milla’s House which serves countless individuals and families in our community.   

Ann Carlyle Gieselmann (pictured below: center, and her cousin Vance to the right)  attended Camp Good Grief last summer and had a wonderful time with new friends, learned a lot about feelings, emotions, and coping skills,  and worked really hard on her grief. This summer, she was thrilled to come back to Camp (alongside her parents, Dana and Frazer) to serve sno-cones to campers at our annual carnival afternoon. As a special surprise to Ann Carlyle, she was inducted as an honorary member to a special group of people called Team 1520. Not just anyone can be a member of this elite group – Team 1520 members are former Camp Good Grief Campers who come back to volunteer and serve at our camps. They are teenagers committed to working on their grief daily and when they are ready, have the unique ability to share their common experience with other children who have lost a special loved one. We are so proud of Ann Carlyle!

While Milla is no longer physically with us, her legacy impacts families in our community in big ways. In honor of the one year anniversary of Milla’s House, we encourage you to celebrate with a donut, share your favorite Milla story with someone, or share Milla’s House with someone in need. 

Most sincerely,

Angela Hamblen Kelly	&	Melissa Surles
Executive Director, Baptist Centers for Good Grief		Development Officer

THANK YOU!!!

On behalf of Milla's House and the Baptist Centers for Good Grief, I wanted to thank all of this year's registrants, sponsors and donors for a fantastic event at Wiseacre on May 19!  With your help and many more we raised just over $104,000 for Milla's House!  We had 56 sponsors, 73 donors and 490 registrants for the rides and party!  We distributed 543 T-shirts, ate a bunch of tacos from El Mero and around 55 pizzas from Dominos!

It is such an honor and privilege for Dana and I to see Milla's legacy through Milla's House and it means a whole lot to us to have so many support the work being done and joining us in honoring Milla's legacy.  We are humbled by the continued support of our community!

Thank you for joining us and we look forward another fantastic event in 2019!

Frazer & Dana

5 Days Post Surgery Update

I just wanted to send a quick word out that Elle is doing well!  She seems a little weaker in her core and neck strength the last few days and she's been fussy and restless a little more than usual.  But overall she is doing great and her incisions are healing well.

The surgeon had to shave Elle's head - a lot - in order to have a clean surgical field where he took the old port out and also on the other side of her head where he put the new port in.  After much brainstorming on how to fix her hair, I trimmed about 6+ inches from her super long hair and we are doing a lot of 'Milla buns' and headbands to cover up the incisions/scars/shaved head.

(For those of you who may not understand what 'Milla buns' are :) it's what we call pig-tail buns on the top of the head because I put Milla's hair in those buns much of her last 3 years as her hair was so curly and wild and that kept it out of her face.)

We are so thankful we went ahead and changed the port out with a new one...the old one had a sizable hole in it. It definitely would not have been good to have another infusion with the old one.

We are still on schedule to have Elle's 45th infusion tomorrow morning.  We don't know if we will see a difference in Elle' condition with the new port but anything is possible.

Also, we have a new night nurse starting this week!!  For now, we will still have no help on Saturday nights but 6 days a week is sooo much better than 3 days a week!  

One more big reminder!  Miles 4 Milla's House is THIS SATURDAY, the 19th at Wiseacre!!  Feel free to ride bikes, walk, run or just come for the party!  The family ride (I'll be walking) starts at 10:15 and the party starts at 11.  Rain or shine, it will be a blast with good people, good music, good beer and good food.  Please help us support the Memphis community by supporting Milla's House Center for Good Grief!!

Go here to sign up or donate:

www.miles4milla.org

Much love and THANKFULNESS for all your prayers and encouragements!

Dana

Quick Post-op Update

Elle’s surgery went well! We are in a room and she's sleeping right now.  She is running a little bit of a fever and having a lot of seizures but all in all, she is doing fine.

We will stay the night at LeBonheur and should get to go home tomorrow barring any complications.

Thank you for continually lifting us up!

PS - for those of you that didn't know, Elle's surgery was cancelled yesterday and scheduled for today because the hospital had some emergency cases come in.

Surgery Bumped

Hey everyone - I just wanted to let everyone know that due to an emergency that came up, Elle's surgery was bumped to tomorrow at 2:30.  

Please continue to pray for her and that she will have patience and understanding as much as she possibly can tomorrow!  And of course for safety and her doctors and nurses, etc.

Thank you!!

Dana

Surgery Next Week

Hey there, all!

Elle had her 44th infusion Tuesday and we ran into a glitch. Her port (it goes into her brain to deliver the enzymes) started to leak.  Thank God they figured out a way so that she got most of her enzyme infusion but we are going to have to replace the port.

So next Tuesday, she will be having surgery to take out the bad port and put in a new one on the opposite side of her brain.  We aren't sure why it stopped working - it should have lasted another couple of years.  They did a CT scan Tuesday just to make sure nothing had broken off or dislodged and the scan looked fine - so there's no emergency in needing to get the port out.  And there are no signs of infection.  Whew.

Her surgery is at 11:30 so please pray for fortitude for us as Elle can't eat or drink after midnight.  She usually eats 2 or 3 breakfasts between 1am and 7am so this is going to be very difficult for her as she can't understand why she won't be able eat or drink.  She is cognitively around a 2 or 3 year old level - with a 6 year old body - and the strong will and feistiness of a wild animal. :)

Tuesday, she will get a CT scan and then the surgery and then will stay in the hospital for 1 night.

Please also pray for good wound healing and healing in general and no infections in order to be able to get her next infusion on schedule (the following Tuesday).  Also, as you all know, any surgery for any person is not without risks, but for Batten kids, the stakes are a little higher because of their weakened immune systems and weakened muscles among other things.  There is always a nervousness with anesthesia and breathing tubes - having trouble breathing on her own after they remove the breathing tube.

Please continue to pray for a night nurse as we still don't have one for 4 nights/wk.

Thank you all so much for all the kindnesses and love and encouragement!!!  Much love right back!

dana

April

Long overdue update - but thank you for faithfully praying for us and loving us as always!  God is certainly sustaining us through you!

Not much has changed with Elle until really the last week or so.  We are still working to control her seizures.  We started another new medication about a month ago after trying 2 others that failed horribly.  We have to slowly increase (or decrease) the doses of these medications and currently we are still increasing the newest one.  I will say that for the first time in a long time, we may be seeing some consistent improvement in her seizure frequency and without the dreaded behavior problems that usually come along with seizure meds.  She is still having some hard and long drop seizures but we are seeing less of them!  And her mood has been mostly good!  She has been more giggly and happy and she is having a bit of an easier time with transitions.  AND slowly but surely, her falling-asleep patterns have gotten so much better!  Her overall sleep is still awful but she is not restless and thrashing and moaning for 45 minutes as she is trying to go to sleep.  She typically will fall asleep on me and I'll hold her for awhile and then put her in her bed.

So for now, we have seemed to solve the going-to-sleep problem...now if we could just get her to stay asleep...

The only good thing about her sleep pattern is that there is actually a bit of a pattern to it.  Milla never, ever had a pattern to her sleep (other than it was bad) and Elle hasn't either until the last couple of months.  So at least we pretty much know what to expect.  We still don't have a night nurse for 4 nights every week and that has been absolutely brutal.  Please continue to pray that the staffing company finds someone soon to fill this spot.  (On a positive note, the night nurse we have for the other 3 nights is absolutely wonderful - she is fun and full of energy and Elle loves her.  :) We pray that she will be able to stay with us for a long, long time.)

We are so thankful to finally be seeing these little bits of (good) change in Elle's condition as she has been on a downward spiral since mid-December.  Her little body has been suffering so much.

April brings lots of rain and lots of birthdays around here!  Ann Carlyle turned 9 earlier this month and Elle turned 6 last week!  Both had wonderful parties to celebrate their sweet lives and they both had a blast (even though Elle's party was rained out) - and lots and lots and lots of treats as the whole month has pretty much been a birthday celebration!  As so many have said before and I continue to see in my life, the days are long but the years are certainly short.

Note: I started this update this morning and then stepped away from it until late this afternoon.  And Elle's seizures were worse today again.  So we will see how she does tomorrow.  And we will be thankful for the few good days she had this week.  

So that's about all I have for now.  

Oh - please don't forget to sign up for the Miles for Milla's House Bike Race!  It is May 19th at 10am and you can even walk/run if you want to - that's what I'll be doing!  Go to http://miles4milla.org to sign up or donate.  (There's also information about Milla's House on the website.)

Much love to you all!  God's mercies never fail.  I read this quote from Joni Eareckson Tada recently...

"The weaker I am, the harder I must lean on God's grace; the harder I lean on Him, the stronger I discover Him to be, and the bolder my testimony to His grace."

God is good - on good seizure days and on bad seizure days.  God was good even when Milla died and He remains good as we continue to grieve.  God is good when we get to sleep and when we don't get to sleep.  He remembers that we are but dust and will hold us together despite our frailties.  Thank God my circumstances don't change Him.  

-Dana